Losing family to my illnesses

October 11, 2011

Some people with chronic illnesses talk about losing friends due to the illness.  I can see how that might happen.

For me it was different, since my illnesses started at such a young age.  I was a child when the symptoms first started, and by the year following college they were affecting me in much bigger ways.  I didn’t lose any friends because I had the illnesses before I met them.  On the other hand, I’m certain that I’ve missed out on starting friendships and romantic relationships because of the illnesses.  I put up walls to avoid getting hurt, and ironically that probably ends up hurting me more.  Yes, have been people in my life who didn’t want to be around someone with health problems, but my guess is that I mostly pushed people way.

There’s one exception: a sibling.  She knew me before the health problems started.  Somehow, though, she’s less sympathetic than my friends.  She’s the only one who has ever questioned my truthfulness about symptoms.  She was once with me during a flare and was horrified by it.  For a while after that she was very understanding.  Then when she didn’t see any severe symptoms for a while (because I always try to hide them, even from family) she began to doubt me again.  I know that there has been some jealousy, but aside from that, I don’t understand why she isn’t supportive.  That isn’t to say that she hasn’t been supportive in the past; there have been times over the years when she has helped me out.  This time, she’s noticeably absent.

It’s been hard, but I finally decided to take a medical leave of absence from my job.  I told my parents in person, but emailed the rest of my family and some friends.  I couldn’t handle having the conversation over and over.  In the email, I asked people to respond by email instead of calling, since I needed some time to get a handle on things.  I got the most amazing, supportive emails.  Some made me laugh, one made me cry, all made me feel loved.  I have the best family and friends.  Sadly, almost as loud as the support was the silence from several people.  I don’t know if they are clueless or don’t care or something else.  I know they read the email.  And among them is this sibling.  She never responded.  How could she not respond?

Now, we’re not close.  Actually, we don’t get along all that well.  But whenever either of us has needed something, the other has been there for her.  I’m not asking her to do anything for me.  I’m not expecting any actions.  But I’m shocked that she didn’t even respond to my email.  How could someone be so callous towards their own family member?

There have been a few times over the years where we didn’t talk to each other.  We always knew we’d work out our problems eventually.  I always assumed that sooner or later we’d figure out a way to get along.  But this is unforgivable.  Maybe if this was the first incident I’d let it go, but I just can’t do it again.  She’s appeared to have resentment of my health issues for years and I’m just not going to put up with it anymore.  Life is too short, and I need to focus on my own problems, not on her problems with me.  I’m so thankful for the many supportive family members who have been unbelievable this week.  I’m so thankful for the many friends who are saying and doing all the right things.  If only my sister could do that.

 

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Aaaand….. START!

October 10, 2011

It’s funny how quickly things change.  After weeks of considering taking a leave of absence from my job, the time as finally come to do it.  Tomorrow is the first day that I will not be at the office.  I have many mixed feeling about it, but apprehension is definitely in there.

It has taken a long time for me to believe it, but I do know now that this is the right thing to do.  I need to do this.  What I don’t know is if this will work.  I’m so nervous about it.  It will take a lot of self control to not try and do everything at once.  I’m not sure how I’ll do it, but somehow I have to force myself to rest and relax for the first week.  That should be interesting.  I hope I can do it.  It feels like a lot of pressure right now.  I just hope it works.  Wait, did I say that already?  Wow, I really do need a break.

 

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Through the eyes of babes

October 9, 2011

I just got a completely new perspective on my illnessess, all from talking to a three-year-old.

If you spend any time with children, you know that they’re naturally curious.  “Why?” is a question that you hear a lot.  I’m spending the day with a good friend and her little girls.  The older one is approaching four years old and she questions everything.  Why do I like drinking water?  Why don’t I like tomatoes?  Why don’t I want to sit down?  Why am I taking medicine?  Why won’t I get down on the ground to play? 

We all know that it can be difficult to explain these things to an adult, but it’s so different trying to explain them to a child.  I can say that I do something because it makes me feel better, but I want to be careful; I don’t want her to think she should do the same thing to feel good.  And if I say that I don’t do something because it makes me feel bad, will she start to think she shouldn’t do it, in case it makes her feel bad?  She doesn’t know what a chronic illness is, and I don’t think she should, not at her age.  Explaining all of my dos and don’ts, should and shouldn’ts, can and can’ts has taken on a whole new meaning.  It forces me to look at my own abilities and limitations in a new way, to think of ways to explain it all to a three-year-old without lying.  It’s an intereting challenge, and one that I am glad to take on, because I think that the new perspective is healthy for me.

If you want to see your health in a new way, trying chatting about it with a child for while.  I can almost guarantee that you won’t see your illnesses in the same way anymore.

 

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Breaking away from my mirror

October 8, 2011

What do you see when you look in the mirror?  What should you see?

I think that when I was child I saw my true reflection.  I didn’t have the usual adolescent body image issues…. at least not when I was an adolescent.  I looked in the mirror and saw what I really was.  If anything, I was a bit blind to my image; I didn’t check for fashion in the way that my peers did, so my “awkward” teen stage lasted longer than it had to.

Of course, over the years that changed.  I started to notice my weight, for good and bad.  I found gray hairs a few days before my 29th birthday.  I paid attention to the way my clothes did or didn’t accentuate my good features and hide my less good ones.  This was all pretty normal.  I never obsessed over my image (well, maybe a bit before a big date) and I didn’t worry about a slightly thicker waist, a little extra flab, or a bad haircut.  In fact, I think I’ve had a pretty healthy body image.

The interesting thing is that I haven’t been looking at the standard parts of my body in the mirror lately.  These days, when I look in the mirror I notice new pimples (a sign that some meds need to be adjusted), the worsening curve of my spine (yes, it’s visible from a quick look in the mirror), and dark bags under my eyes (I haven’t slept properly in many months.)  I pay attention to these things, but why?  I’m realizing a few things:

  • No one else notices them.  They are glaringly apparent to me, but the rest of the world just sees short stature, short hair, big boobs.
  • There is nothing I can do.  Sure, I see the curve in my back getting worse.  It means I need to lose weight and do more physical therapy.  But I already knew that.  Looking in the mirror doesn’t help.  The bags under my eyes could be hidden with makeup, but otherwise, I can’t do anything but get more sleep, and it’s not like I haven’t already tried that.  Seeing it doesn’t change it.
  • If I focus on the good parts of my body, the parts that look nice and don’t hurt, it could be a good distraction from the rest.
So yes, I’ll watch for symptoms that can be informative, like the pimples, but it’s time to start ignoring the rest.  If it isn’t helping, then it’s hurting, if not physically then definitely emotionally.
Ok, it’s time to go raid my closet for an outfit that makes me look hot.
 
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